Day +75: Finding a Natural Weight

As most of you know who have checked in with us at one time or another, Zoe has been on steroids for most of her life at this point. She gained a great deal of weight pre-transplant due to them, and has since retained a decent amount of it. Her percentiles for her age and size put her in the ~90%, meaning she is larger than most babies her age and length.

We’ve been slowly creeping back down from that as she started to grow again and become more mobile, she seemed to stop gaining height for a couple months during the worst of chemo and steroids. Now, she really only retains her steroid cheeks, and even those are in slow decline finally.

During this process we’ve had a heck of a time getting her meds right, as we’ve moved from IV nutrition to milk and solid foods. Zoe’s weight has gone down, her Tacrolimus level (immuno-suppressant chemo) has shot up, and her Magnesium has dropped considerably. Last week and this week have been all about trying to get her eating, trying to figure out if her Tacrolimus readings are “real” or an error of the test, trying to get her Magnesium back up.

Where we are at the moment is, Zoe’s weight is around 8.2 kilos, which is pretty close to where she should be for her size, around the 50th percentile. I’ve come to feel that she’s trying to find her “natural” weight, the weight she would be were it not for all of this mess she’s had to endure. She seems to be much spunkier than she was even a week ago, and feel more comfortable moving around. She sits up easier, rolls on her side easier, and holds herself up on her belly with ease. All part of growing up, of course, but the change seems to be related to the weight. We can feel that she’s lighter. She seems to feel it too.

Zoe’s Tacrolimus level has shot up very high, and they’re inclined to believe it is accurate now — 1800, where normal is 500 for her. This can cause all manner of problems if it continues, so we’re going to suspend it for now, until we figure out the new dosage. Her Creatinine is up as a result, and because the Tacrolimus leeches Magnesium, that is very low. She’s getting supplements of Magnesium now 3 times a day, but she has gotten so proficient at spitting it out that we are struggling to get the levels up.

nom nom

We’re crossing our fingers that all of this settles out once her weight stabilizes. She’s eating pretty well, but the change in diet has definitely wreaked havoc on her med situation. If we can get it figured out without any seizures from too much Tacrolimus, or GVHD from too little, all will be well. We’re a little anxious, however, since those two situations are a possibility at this point.

On the bright side, she is eating solids quite well, her spirits are high, and her personality is really starting to shine through with little happy noises, laughter and cute little eyebrow maneuvers whenever she’s listening to us speak.

Oh, and she’s cutting 3 teeth now.

5 thoughts on “Day +75: Finding a Natural Weight

  1. I haven’t seen her in over a month and she has changed lots I am sure. Thanks for the info on weight and developmental body moves. M.

  2. Evan and Michelle,

    Good to hear she is doing well with the sitting up and her mobility. She is adorable. I love the picture with her almost putting her toes in her mouth!!

    Hopefully soon you all will be back in your home in Winston Salem.

    Take care and we love you!

    I have a package for Maya and Zoe and would like to mail it would you let me know where to send it. I did not want to send to your house since you are not there.



  3. All the best with your daughter. Our daughter who is now 19 months had a BMT for AML Leukemia about a week before your daughter did 15 June 2010.

    Looks like we are on a very similar journey, and like you, for us, so far, so good. Prayers and good thoughts to you all.

  4. Hello my name is Maria, I have a 3 month old baby who has been diagnosed with HLH in june13 2013… And I could like to know how did you find out it was cause of a viruses that she got the HLH and that it wasn’t something generic…

    • Zoe’s HLH was genetic, but it was triggered (as in she got sick and couldn’t get better) from a virus. This is typical of HLH in children. My understanding of the science is that HLH in children under age 2 is almost always genetic. You can have tests performed by Cincinnati Children’s Hospital to confirm, your doctor should be able to give you more information about that.

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